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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Bouncing back

Terri Reinhart

 

I looked at a bunch of anatomical drawings and still couldn’t figure it out. I even saw one drawing specifically of a woman’s abdomen after a hysterectomy and not even that drawing answered my question.

 

From the drawings, it’s obvious to me that our internal organs are meant to fit together like a very complex three dimensional puzzle. So what happens when one of those organs is removed? What happens to the empty space? Do the intestines just simply plop down and make themselves at home? Do things ever get mixed up?

 

It probably doesn’t matter. I was just curious.

 

I’m down by one uterus, two fallopian tubes, two ovaries, a dermoid tumor, and numerous fibroid tumors. I’m also down by 8 pounds. My doctor said that everything went very well

 

My surgeon, who is very, very good, by the way, looks like she’s about 22 years old. She has oodles of energy and is passionate about her work. She knows that the new way of doing hysterectomies is far better than the old way. The new way means that I have four small incisions, each about an inch in length. I don’t really want to share the details of how they remove an enlarged organ through those tiny incisions, I’ll just leave it that it makes healing much quicker afterwards. She did explain it to me and I doubt that she even noticed when I turned green and nearly lost my breakfast. Some of the medical details, I’ll happily leave to the experts.

 

She was confident about the recovery time, however, and sure that I would be up and ready to do anything within a week or so after the surgery. She also told me that there would be another surgeon in with her, that they always had two surgeons work together with this type of surgery. Somewhere in the back of my mind, I was convinced that the other surgeon would, of course, be at least somewhat older than my doctor. When I met the other surgeon, however, SHE looked to be all of 22 ½ years old. In fact, out of all the medical people I met right before going in to the operating room, only one of them looked to be older than 25. Then they wheeled me into the OR and put the mask on my face, telling me to breathe deeply. The last thing I remember hearing before I went under the anesthesia was my doctor asking someone, “Do you know how to set up for a laparascopic hysterectomy?”

 

Sweet dreams.

 

All went well and my doctor went out to tell my husband how quickly I’d recover. I’m sure my husband started to make plans for me right then and there. The inside of the house needs painting, the floors could use a good mopping, and it sure would be nice to have a walkway from the house to the studio. But, first things first, my doctor said that they would be getting me up to walk already that evening.

 

They forgot to take my Parkinson’s into account. When I finally woke up after surgery, something that takes longer for me than for most people, and got into my room, it was getting late. I hadn’t had my medication all day. As promised, the nurses got me up to walk – first to the bathroom. It was no go. My dystonia kicked in big time as soon as I began to move and I couldn’t walk at all. I couldn’t make it from the bed to the bathroom, even with the nurse holding on to me. I had to be content with a bedside commode and a CNA to help me transfer. I was given strict instructions to call for help when I needed to go.

 

Then finally, the nurse brought my Parkinson’s medications. However, the pharmacy had sent the wrong dosage. After much arguing and finally just putting my foot down and being stubborn, the nurse called my doctor and I received permission to take my own medication from home that I had brought along. They don’t like you doing that in a hospital. Once the meds took effect, I had no trouble transferring to the commode, but still got a lecture from the CNA when she caught me in the act. The next morning brought even more trouble when I took my meds on an empty stomach and, twenty minutes later, I suddenly felt very strange and told the nurse that I had to go to bed and had to sleep (I had been sitting in the chair). I lurched over to the bed and was asleep in seconds. I scared the crap out of the poor nurse, who immediately went to her charge nurse to complain about her unruly patient.

 

Waking up after a lovely little catnap, I felt so much better. The nurse, however, did not. When my husband arrived, she came in and looked at him sternly, “We had an incident this morning.” I looked sheepish and wanted to explain that I hadn’t taken anyone hostage and had only taken my own medications, but one look at the nurse’s face and I didn’t think it would be helpful to say much of anything. I did try to reassure her that my “incident” was a fairly normal and expected side effect of taking my Parkinson’s medication on an empty stomach, while my body was pretty stressed out. She didn’t believe me. Her charge nurse had another explanation and one doesn’t argue with charge nurses.

 

I decided right then and there to believe my lovely, young, energetic surgeon. I decided I was recovering very quickly and was ready to go home. At least my family would understand all my wonderful quirkiness with my Parkinson’s.

 

I am feeling much better now. It’s been 5 days since my surgery and I am definitely getting my energy back. Today, I sat in my chair, worked a little on a book project, sipped my hot cocoa, and watched the snow fall. I also watched my husband and kids do dishes, cook, wash clothes, clean house...

 

Ah yes, it’s nice to be home!

 

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On a side note, I plan to talk with my neurologist about my hospital experience. None of the medical professionals on the floor knew anything about Parkinson’s. And I’ve since heard similar stories from people who have MS or Lupus. How can we provide information to the hospital staff in a simple, direct way, so that patients with disorders like these can get the care they need? I’m even willing to help with this. I wouldn’t want this left just to the doctors. Not even a good neurologist who specializes in Parkinson’s will know just what the patients go through. We need our voices heard, too.